JMIR Publications

ABSTRACT

Background:

Improving access to end-of-life symptom control interventions among cancer patients is a public health priority in Tanzania in need of innovative community-based solutions. Mobile health technology holds promise; however, existing resources are limited and access to palliative care specialists (hereafter, specialists) is poor. A mobile platform that extends specialist access via shared care with community-based local health workers (LHWs) and provides remote support for pain and symptom management can address this gap in care, particularly in low-resource settings.

Objective:

The aim of this study was to design and develop mobile-Palliative Care Link (mPCL), a mobile/web application to support symptom assessment and care coordination and control, with a focus on pain.

Methods:

A human-centered iterative design framework was used to develop the mPCL prototype for use by specialists (palliative care physicians and nurses), poor-prognosis cancer patients and their lay caregivers (patients/caregivers), and LHWs. Central to mPCL is the validated patient-focused African Palliative care Outcome Scale (POS), adapted for automated, twice-weekly collection of patient/caregiver responses, and timely review, reaction and tracking by specialists and LHWs. Prototype usability testing sessions were conducted in person in a controlled setting with 21 key informants representing target end users. Sessions consisted of direct observations and qualitative feedback on ease-of-use and recommendations for improvement. Results were used to build a usable, functional prototype for subsequent real-world testing. Early pilot testing was conducted by deploying the application among ten patients/caregivers, randomized to mPCL use versus phone-contact POS collection, and then gathering feedback from the specialists, LHWs and nurses who used mPCL to manage care. This feedback was employed to further optimize the application for a broader randomized field study to examine the application’s effectiveness in symptom control among cancer patients.

Results:

mPCL functionalities include the ability to create and update a synoptic clinical record; regular real-time symptom assessment; patient/caregiver and care team communication and care coordination; symptom-focused educational resources; and easy access to emergency contact information. Results from usability and pilot testing demonstrated that all users were able to successfully navigate the application and feedback suggests that mPCL has clinical utility. User-informed recommendations included: further improvement in navigation of the application, simplification of patient/caregiver components and language, and delineation of user roles.

Conclusions:

We designed, built, and tested a usable, functional prototype of a mobile application supporting palliative care for cancer patients in Tanzania. mPCL is expressly designed to support coordinated care via customized interfaces supporting core users—patients/caregivers, LHWs and members of the palliative care team—and their respective roles. Future work is needed to demonstrate the effectiveness and sustainability of mPCL to remotely support symptom control needs of Tanzanian cancer patients, particularly in harder-to-reach areas.